Intervention programs and case managers
In addition to the factors reviewed already, you may wonder which intervention programs are helpful in aiding transition to post-secondary education and/or employment. This is a relatively new area of research, so findings for most interventions are preliminary. For example, video modeling of social-communicative skills was found to improve these skills in two college students with Asperger syndrome (Mason et al. 2012), but a group of autistic adolescents doing an online transition planning program did no better than a control group (Hatfield et al. 2017).
As mentioned, large-scale longitudinal studies are ideal when evaluating what makes a difference to youth outcomes. There is one such study in the field: the National Longitudinal Transition Study. This study found that case management in adolescence was associated with increased community and social participation in adulthood (Myers et al. 2015). The authors concluded that case management may be crucial for optimizing adult outcomes in ASD. Therefore, if you are going to seek out one intervention to help your child succeed in adulthood, seek out a case manager who has experience with ASD! The role of case managers is discussed further in Chapter 3.
Robert’s story continues
Having reviewed what is known about transitional challenges and positive predictors, let’s return to Robert’s story. When we left Robert, he had just been referred to a psychiatrist for antidepressant treatment. Fortunately, the psychiatrist did not merely review his depressive symptoms, which might have resulted in medication treatment, but examined the developmental changes that contributed to Robert’s deterioration and made it difficult for his family to help him. She concluded that Robert had a depressing lifestyle but medication was unlikely to solve this problem. Instead, she proposed talking to Robert and his parents about realizing his hopes for life as an adult.
She began by encouraging Robert to remember what he used to enjoy in high school. Initially, this made Robert quite sad, but then he started wondering about similar activities that might be available to him now. In his community, there was a public library which carried many books and videos related to Robert’s favorite game and a low-cost “pay as you go” gym which did not require a commitment by participants. Both interested Robert. Robert also had a favorite teacher who was his mentor in high school. After a call from the psychiatrist, he agreed to meet with Robert occasionally to encourage his progress. Robert was more inclined to listen to this mentor than to his parents.
Next, the psychiatrist talked to Robert and his parents about how to support attendance at these activities. The need for a regular wake-up time and reliable transportation was identified. His parents protested that learning to use an alarm clock and a public bus seemed like overly modest goals relative to Robert’s good level of functioning in high school. However, these goals had several positive effects: first, they re-introduced some activity and sleep routines into Robert’s daily life, which improved his physical and mental health; second, they interrupted his unhealthy eating and gaming habits, at least for a few hours at a time; third, they brought Robert in contact with people outside the family, which helped him re-learn basic social skills and gave him the opportunity to make new friends.
Importantly, the goals set were Robert’s goals rather than those of his parents. His parents were encouraged to offer help, but not to nag Robert about his activities. If he seemed to be doing poorly for a few weeks, they were encouraged to set up a meeting between Robert and his mentor. As Robert started spending time outside the house again, his parents were less preoccupied with his problems and the spousal relationship improved. Robert’s brother was no longer envious of him, and stopped skipping school. Family harmony returned.
Eventually, Robert admitted to his psychiatrist that gyms and libraries can be a bit boring, and expressed an interest in working at an electronics store. With his parents’ advocacy, Robert got a volunteer position at the store. After six months of volunteer work, it became a part-time job. Robert also started going to the movies about once a month with one of his co-workers. His family doctor was surprised at how contented and healthy he looked a year after completing high school, despite not being on any medication.
Consistent with the evidence reviewed earlier in the chapter, Robert improved as his days became more structured and additional supportive adults became involved (the mentor, the electronics store owner, the psychiatrist). Given the ongoing coaching and advice she provided to Robert and his parents, the psychiatrist also resembled a case manager. Progress was slow, proceeding at a rate comfortable for Robert. Adapting the transition to Robert’s needs, interests, and pace was crucial, as was his family’s ability to work with the psychiatrist, reduce conflict, and tolerate the slow rate of change. All of these factors worked together to build momentum towards a positive transition to adult life.
Even though Robert showed great improvement, this is not the end of his transitional story. It is still not clear, for example, if he will ever be able to work full-time or work in a less supportive environment, if his circle of friends will ever expand, or how much independence from his family he will achieve. Only about 20 percent of autistic individuals become fully independent (Poon and Sidhu 2017). Robert’s positive momentum may continue, or a change in circumstances may disrupt it. The electronics store could go out of business, the mentor could move away, the psychiatrist could retire, or the family could face a new challenge. Any of these events could derail Robert’s progress. Robert’s parents will have to think carefully about how to ensure he has a larger “safety net” of supports in the long run, and greater resilience to cope with future circumstances. Part 3 of this book is dedicated to these long-term concerns.
Final, hopeful thoughts
Unfortunately, there is no “quick fix” to help youth on the autism spectrum achieve their full potential in adulthood. If there were, this book would be unnecessary. It takes time and effort (yours, your child’s, and other concerned adults’) to reach a satisfactory outcome. The next chapter describes what might constitute “satisfactory” in each case. In my own journey with my son, I was getting quite discouraged until I remembered something: when he started school, it took five years to find a program where he felt accepted and was actually able to learn. Why should the more complex transition from school to adulthood be faster?
To maintain some hope and equanimity during this challenging time, a few further thoughts may be helpful. First, some things are beyond your control. In particular, you may not be able to control the achievement of milestones which require commitment on the part of other people. With some effort, you can probably find consultants or short-term ASD-focused programs targeting employment skills, adjustment to college, social skills, and so on. Unfortunately, a brief consultation or a few months in a program will not help your youth weather the storms of adult life, and is rarely a long-term solution. Parents need partners who can follow the young adult’s progress long term so that gains are maintained or increased over time. Case managers, doctors, therapists, employers, employment counselors, educators, mentors, social workers, close friends (yours and your youth’s), and family can all be important partners. However, the commitment required to be such a partner is rare, and you cannot force it. Chapter 8 discusses how to connect with such helpful supports.
Second, set high expectations but be prepared for disappointment. If you don’t aim high, there will always be doubt about whether or not your youth could have achieved more. If